On the Question of Humanity

As advocates, we sometimes have to stop and ask ourselves a question. Who is it that we are trying to reach?

On the surface, the answer feels very much like the formula for political strategy. You’ve got your solid believers and your solid detractors, and you end up fighting for the undecideds. We reach out as best we can to the general population, knowing that there are those who already believe in our cause, and those who will never support it.

But for disability advocacy, it’s not quite that simple.

Do we reach out to those who seem like natural allies to our loved ones, but whose approach feels distasteful somehow? These are the purveyors of inspiration candy, the ones who believe that the disabled among us are inspirational, or heroic, or angels with a purpose: to empower the rest of us. Through their day-to-day struggles, they show us how to be better people, and they convince us to get out of bed and go to work with a joyful heart, because if that special little trouper can do it, than lazy old able-bodied me shouldn’t complain at all. It feels like it helps, but it absolutely doesn’t. There’s a dash of pity lurking there sometimes, in the midst of this kind of disability fetishizing. I can’t imagine people with disabilities are interested in inspiring you. When we celebrate them as heroes, we miss the point. We separate them from the rest of us mere mortals, but perhaps separation is the thing they wish for the least.

This is a tricky group to advocate to, because they’re mostly on the side of right. It’s worth reaching out to them, because their hearts are good, and a good heart is a solid foundation for real change. Their position isn’t one that most of us are unfamiliar with, either. I don’t like to present Schuyler as an inspiration, although I’m sure I have in the past, but I do think of her very much as a motivator, so perhaps I’m still a little guilty of this myself. I try to do better, however, because letting go of the Heroic Little Broken Girl narrative is a huge step towards embracing her intrinsic humanity.

On the other end of the spectrum, there are the haters. You don’t have to look far to find them. Here’s just one example, from the magic that is the anonymous internet. These comments were left on a story about a professional baseball player giving a jersey to a fan with terminal cancer in a wheelchair:

“TIME TO ACT RETARDED AT DODGERS GAMES.”“This is nice and all, but how bout giving it to someone who can actually appreciate it? That cripple looks like someone just handed him my dirty old gym gear. Get excited, you vegetable!”

Do we try to reach this person? My honest opinion? Probably not. I mean, you can try. There’s also that dividing wall in your living room that you’ve been wanting to knock down, and you could try using your forehead to do it. I suspect you’d get the same results with both tasks. Probable failure, or success but with a monster headache and a lot of blood on the floor.

The thing is, not everyone who is left is undecided. Not every dehumanizing party sounds hateful. The most dangerous among them sound downright reasonable. They are the ones who stand most defiantly in the way. They are the ones who go to city council or school board meetings and with voices both calm and reasoned make the policies that weigh down our loved ones like chains, or make them invisible altogether. They are the ones who make services and education for the disabled sound like entitlements, or luxuries that we might be able to afford next year, perhaps. They are the ones who reject individual social responsibility in favor of community Darwinism, and make basic human rights sound like a choice that we can easily reject and still sleep soundly when we get home.

Meet Scott Belkner. If you can look beyond the inspiration candy of how this video is presented, Scott himself has one clear message. Scott isn’t a hero. Scott can do whatever Scott needs to do. It might take him longer, and he might have to try harder to accomplish it. But Scott isn’t looking for pity, and he’s not trying to inspire you. He’s letting you know that if you’ll simply give him a chance or at the very least stay out of his way, he’s going to live his life on his own terms. You can deal with that however you please.

For one commenter, dealing with that means offering up the choice I mentioned earlier, the false one that suggests it takes more to qualify as human than self-actualization.

“I’m sorry if this comes across as negative, but how much does it cost to give an extremely handy capped individual an iPad with voice capable technology? And with that same amount of money, how many homeless and productive individuals can you help. Even if only one of the many sponsored homeless are actually productive, isn’t that still more than one handy capable? I find it difficult to give thousands of dollars to person that will never be able to support themselves no matter the circumstance, over a small child with cancer. I am proud that he lives his life to a successful state. But the next woman we save from breast cancer might be our next president.”

Productivity. Giving back to society in a measurable way, something that can fit on a timecard, or a resume. It’s not enough to have value as a human being, to live and love and think and write and communicate your thoughts to others, no matter how great or how petty those thoughts might be. Human value is a thing that can be measured, by the units you manufacture or the items you sell or the slick deals you make or the swell gadgets you own. For those whose contributions are less easily predicted or quantified, the very basics of education or accommodation or even basic communication are suddenly up for grabs.

If you think this is an oversimplification, there’s something else I’d like to share with you. A few years ago, I wrote a couple of pieces for an extremely conservative website. Preaching to the choir gets old, and sometimes you need to venture into the lion’s den. The response was about what I expected, and those essays are no longer on the site. Perhaps that’s for the best, I don’t know.

But at least one other conservative site picked up the ball and ran with it, in response to a piece I wrote concerning the societal responsibility for providing special education in public schools. Of all the things for which I have advocated over the years, I wouldn’t have expected this to be a controversial subject. I personally believe in public schools, deeply. I think that if we give up on public education, we’re basically giving up on civilization. Just throw open the gates and invite the Visigoths in. And believing in public education means believing in educating all of our citizens, equally (although not identically, a point that seems to escape a lot of people). I don’t think that’s a particularly radical Socialist belief.

Judging from the comments, however, you might imagine that I’d advocated for a sedan chair and four strong men to carry it for every special needs child in America:

“Regarding your daughter, I doubt very seriously that there are “people out there that don’t want her around them” as you say. I bet they just don’t want your child’s special needs slowing down the progress of their own children.

“I’m sure your kid is great. I have a nephew with Aspergers. Once you get accustomed to him, he’s great, and a friggin’ genius to boot. We probably both agree that special kids can be wonderful.

“But when you suggest that making sure that the child gets the special care he/she needs is the responsibility of the school, you lose me as a fan. That’s YOUR job. Special kids need different forms of education. To put them in the ‘mainstream’ as you call it would be to force all of the other students to learn less as your child’s special needs are addressed. Leave the school out of it. It’s up to YOU.”

—–

“You’re simply not being honest if you don’t think putting a child who needs extra help won’t slow down the amount of information being passed to the children who don’t need extra help.”

—–

“The ‘no child left behind’ environment is a lot like hiking. You can only go as fast as your slowest comrade. Not only do the gifted and talented suffer but so does the big middle. Funds go to special ed, and maybe the TAG, but then the rest of the kids get stuck in classes with 38-42 kids, the teachers are overwhelmed and nobody gets and education. When masses of kids drop out the schools breathe a huge sigh of relief because that leaves so many fewer kids taking those standardized tests and fewer kids that need to meet minimum requirements.

“Beware the parents of special ed kids, they are very vocal.”

—–

“Most people have compassion, but we aren’t and can’t be responsible for all people all the time. This business that society needs to pay for all the education for all the children regardless of time, money and effort is absurd. If you have a special needs kid whose needs aren’t being met by the programs offered for free by the public school system then pull your kid out and find another way. Quit trying to dip into my pocket and trying to convince me that your kid is my burden.”

—–

“We have shifted drastically from accommodating children in wheelchairs who could otherwise learn to accommodating children who have a pulse. We send children to specialists for swallow tests. Yes, that is a test to see if the child can swallow. We would ask but the children are not able to respond through voice or head motion or even blinking.

“When we spend all education dollars on children with no education goals whatsoever, we have to deny the children with mild disabilities the services needed so that they may attain a standard education. We also deny the rest of the students needed supplies, curriculum, textbooks, etc…

“I am not unkind. I want a balance. We have slipped too far to the side of entitlement without end. We need to have some balance and that must start by curtailing services without end for children with profound disabilities and no hope of education.”

The thing is, these sound like reasonable arguments. Why should your child’s education suffer so that my kid can succeed? Why should valuable resources go to a child for whom we can’t easily envision a productive future in a working society? Why should we try so hard when the end result is so hard to see?

These sound like valid arguments. And I guess they can be, as long as you can do one thing, with clear eyes and an unwavering heart.

You have to be able to deny another person’s basic humanity, based on nothing more than your own expectations and your own ideas of what that humanity looks like. If you believe that we don’t have intrinsic value as human beings, and that we have to somehow earn the right to be a person, then these arguments probably make sense. You can make them, and you can go to your PTA meeting and argue that special education funds are a waste of resources when compared to what might be accomplished by supporting programs for kids who are going to go to ivy league colleges and become doctors or attorneys or work on Wall Street. If you can make that choice in your head, in a way that doesn’t make your heart sick, then those arguments may sound reasonable to you.

If that’s you, I honestly don’t know how to advocate to you.

I wouldn’t direct you to the Bible, because despite your ideas about what it means to be human, I suspect you already know your gospel better than I do. But I might invite you to talk to the Quakers. The Religious Society of Friends, as they are formally known, believe in a direct relationship with God and a universal priesthood made up of all believers. The Quakers see God as an intrinsic quality, present in all of us, rather than an external force. The light of God shines from within, they believe. We understand God by finding that light in others. To find it within the disabled, whose lives seem the most remote from our own, and to relate to those people instead of marginalizing them or running, that’s a path to seeing God.

That’s what the Quakers believe, anyway. Personally, I’m an agnostic, so I’m open to the idea.

If Western religion isn’t your thing, I might suggest you visit some of what we might arrogantly refer to as primitive societies such as the horse tribes of Mongolia, or any number of African tribal communities. In many of these cultures, children with differences are identified when they are very young. This form of early intervention doesn’t identify kids as autistic, or bipolar, or epileptic, or nonverbal. They see these children as belonging to a different spirit plane. They’re not pitied or held up as special angels or heroic little troupers. They are apprenticed to the culture’s shamans, and their differences are cultivated as a bridge to a spirit world that is valued by their society. These children have value, as much as any other. Their humanity is seen as augmented, in a way that is honored and respected and never questioned for a moment.

Primitive, you might be thinking. Well, you’re probably right. These aren’t cultures that value material acquisition. They don’t know how to use an iPhone and they’ve never followed the stock market. They don’t understand that their society should value productivity and conformity.

They’re barbarians. We have nothing to learn from them. Right?

Note: To support the site we make money on some products, product categories and services that we talk about on this website through affiliate relationships with the merchants in question. We get a small commission on sales of those products.That in no way affects our opinions of those products and services.

Share this:

Related Posts

About The Author

Rob

Robert Rummel-Hudson is the author of "Schuyler’s Monster: A Father’s Journey with His Wordless Daughter", which tells the story of raising a little girl with a disability and learning to become the father she needs. It was published in February 2008 by St. Martin’s Press.

The primitive cultures do have it right, and the truth of the matter is we have it wrong. At least for the severely disabled, and I know of what I speak, special education, IDEA, NCLB, and FAPE do have it wrong.

You clearly state “They see these children as belonging to a different spirit plane. They’re not pitied or held up as special angels or heroic little troupers. They are apprenticed to the culture’s shamans, and their differences are cultivated … ” EXACTLY. Maybe for this population, separate but equal, with all its nightmare errors, is correct. My girl should NOT be slowing your children down, should not be taking away any opportunity from them, and her goals should, must, be different.

Those with disdain, hate, and pity, will always exist. But we must acknowledge differences, especially marked ones, and work towards everyone’s best interest. It may be idealistic to believe everyone deserves the same shot at destiny, but in reality, there is only so much that can and should be done.

How is it that kids with special needs will “slow down” other kids or take opportunity from them? I see diversity of every kid as a boon to a classroom. The more different types of people in the room the MORE opportunity kids have to learn.

Maybe you (and others who think this way) are imagining that kids in such classrooms will be slowed from passing certain single-skill tests, but I question the educational value of that anyway.

There are many ways the severely disabled have a positive effect on a classroom and on the other students. But there are also many negative effects.

For instance, in many areas it would be illegal to offer a field trip somewhere that is not 100% accessible to all students in the class. Obvious detriment to students studying historical sites, etc. Additionally within the classroom, special accommodations often can be distracting for other students. Augmentative communication devices can cost thousands of dollars when the outcome of their use is often questionable or unknown taking money away from vital budgets.

You say the other students have “MORE opportunity” to learn. But to learn what, exactly?

For the typical students, there are pluses and minuses to having the severely disabled in the same or an equal program. What are the documented pluses for the special needs child we are talking about and are they worth the cost?

There can be downsides, it’s true. But I can honestly say it was my typically-developing peers who had a more negative impact on my education than the students with intellectual disabilities who were mainstreamed in my class (I myself have a physical disability). Where is the outrage about the typically developing kids who interrupt class with fights, disrespect, and clowning around? What about the kids who never come prepared for group projects? They impacted my education. But no, we don’t talk about them.

Also, there is research on the effectiveness of AACs. They are getting cheaper too. My son’s iPad, AAC app,and case were just over $600. My son can now communicate with us in a way that he wasn’t able to 5 weeks ago. We spend a ton of money on athletic equipment most of the students will never use. Why not spend some to give kids the ability to talk?

I don’t think that every child should be mainstreamed either (that’s what you’re saying, right? That they shouldn’t be?), but I don’t think Rob is saying they should. I think he’s saying our kids deserve to have their educational needs met, the same as any other student (correct me if I’ve misinterpreted you please!). For some kids, that’s going to be having some or all of their classes with their typically developing peers. For some kids, that means being in the resource room. Either way, people still argue they should’t be accommodated in school: their aides are too much, their nurse is too much, their equipment is too much.

You’re entirely correct. That’s one reason I mentioned that in special education, “equal” does not mean “identical”. Mainstreaming can be done creatively, or it can be done perfunctorily, parking students in a classroom in order to satisfy the letter of the law rather than the intent. It can be as simple as an entirely special education environment within a mainstream campus.

If you think of it in terms of inclusion vs. seclusion, it’s probably more clear. What does inclusion look like for the severely disabled? That’s impossible to answer, because it really is something that requires a case-by-case approach. But I think we all know what the seclusion path looks like, and all too often, it’s not beneficial.

I guess the point is that no matter what the educational environment looks like, the resources should be available, and not handed out with regards to some arbitrary measure of that student’s “value” to society.

I couldn’t agree with you more. I have multiple children on the spectrum and I have seen first hand how the differences in mainstream and special ed can impact all the children involved. My oldest daughter had to be removed and placed in a private school because the mainstream setting was not good for her but yet the special ed classes were not meeting her needs either. Once she found her footing in private school we put her back in public school and she is thriving. My oldest son was in special ed since he was 3. Just this past school year he was slowly integrated into the mainstream classes with specials first and then curriculum. By the last quarter of the school year he was fully mainstreamed and he too was thriving! I have one child that will not be able to be mainstreamed, and I am okay with that because a mainstream setting will not meet his needs. But to say that he does not deserve the right to be educated is wrong. He learns. He loves to learn. The same for my other 2 sons and my youngest daughter (yes 6). They all have value as people and they deserve to be treated as such and given the opportunity to learn. If we right them off as people then what are we saying about the value of life?

Your perspective is one that is very different than mine, and I’m really glad you shared it. I hope you don’t confuse my belief that everyone deserving the same shot equals everyone having the same path laid out before them. That’s the biggest challenge in special education, I suspect. The entirely individual approach that every student requires.

I guess the point for me is that every child in a public school environment deserves the resources necessary to give them the best chance of success, whatever that looks like for that student. I’m troubled by the idea that kids in a gifted and talented program (just as an example) are more deserving of school resources because we can quantify their future success in a way that is easier or more comfortable than with a child with a disability.

In the end, for me, it really is about how we treat those among us whose humanity is more challenging to connect with. I really do believe that our own humanity hangs in the balance.

I wish I wasn’t hoping those commenters get hit by buses and paralyzed from the neck down but I kind of…am.

It makes good GOP sense though, right? If we expect people to pull themselves up by their bootstraps in order to deserve to eat then I suppose people without feet needing boots are just plain out of luck.

Re: “…Through their day-to-day struggles, they show us how to be better people, and they convince us to get out of bed and go to work with a joyful heart, because if that special little trouper can do it, than lazy old able-bodied me shouldn’t complain at all…”

I’ve always suspected that’s intended to shame people struggling with social injustice, mental illness, or PTSD into silence, too. “See how that disabled kid can do that? That proves that if you aren’t wealthy/cured by now, it’s your own fault for not trying hard enough! What’d you just say? No, you didn’t try hard ENOUGH, because if you’d REALLY tried hard enough, it would have worked for you like it did for that kid! You’re just a worthless, no-good lazy loser!”

Agreed. And also, if we hold them up as somehow extra brave or extra special, the responsibility for giving them a chance to just have a fair chance in the world doesn’t feel as pressing. Our social contract doesn’t come into play if we’re talking about extraordinary heroic people. Little baby Clark Kent never needed early intervention, after all.

To make the handicapped a part of our lives, to give them importance, would go a long way. You can’t make a teacher be inclusive. Some of them don’t have the emotional maturity. I taught in a PMD (Profound Mental Disabilities) classroom. The Kindergarten teacher invited our kids over to her room to work on basic reading skills. It was no big deal…all the kids got to know each other. It was so……humanizing. It was a very bright, warm spot to be.Inspiration Porn? You bet! That teacher was a great inspiration to me, the kids, the whole school! She led by example. But like I said, few other teachers had her maturity.

My understanding about the law regarding the education of the handicapped that came about in the 70’s was that the money would be in addition to, that is, not taking away from the education of their peers. But when money is tight it is a feeding frenzy, usually for the better off.

I think the problem is that the goals of public education are not well-defined. My firstborn was advanced, and we had to fight tooth and nail to get her an appropriate education. My third needed OT services, and that was a struggle too. Ultimately you get competing interests fighting over limited, finite resources, as in some of the quotes above. I can’t wait for the whole paradigm of public education to shift, perhaps to something internet-based, which will be much more readily individualized for each child’s needs.

Dammit. It posted before I could finish my thought or fix my spelling error. Now I have rage.

I’ve been thinking a lot about this lately and your points here are SO good. I know I walk the “inspiration” line with my own posts, and I know I probably step over it. It’s not my intent. I just really like my kids.

But onto the meat of this. I get so angry at the things people who seem so rational say. I read a long post about the things the Chinese are doing with genetics- basically it’s eugenics- and totally in the name of progress. The author sounded SO reasonable in his defense of the Chinese. It made me physically ill.

If we as a community (oh, I forgot to add the quotation marks) could get our collective shit together and actually advocate the human rights aspect of this, we might reach a point where framing services and education as a choice or an entitlement would because distasteful.

That’s my foolish dream, anyway. I think we’re sunk otherwise, doomed to fight among ourselves over the scraps like we do now.

That pretty much sums it up. My son was diagnosed with Epilepsy at age 18 months. He has since probably “outgrown” his diagnosis. Because he is pre-preschool aged, I had only started to explore what going to school might entail.

I also have a niece who is considered to be severely disabled and I have been there while my sister struggles to get her basic educational needs met and very basic needs met while at school- like the need to eat. Because my niece has a g-tube and my sister blends healthy foods for her to eat instead of dumping formula filled with sugar, corn syrup etc. into her tube, the school refuses to allow the already on campus nurse/aids to feed her the prepared meals my sister will send and potentially refuses to allow her to be fed on campus because it is a safety issue. Even though my sister has been safely feeding her for years.

My niece communicates with an iPad (paid for by family/friends/fundraising) because she is non-verbal. She communicates and learns.

Do some people act like she is a trouper or an angel? Yes. Is she? Well, like ANY child, she can be both of those things, and also like any child, she can be a real stinker. After all, she is human.

I am neither republican nor democrat, but I did notice a political jab in there towards conservatives (I think it was in a comment) and I’d like to point out that probably only the extremists (and) on either side are likely to marginalize the disabled “for the greater good.” I say this because my family is all over the place politically and we all agree my niece deserves a quality education. I’d like to think that anyone anywhere in middle would see the intrinsic value in every person, just as a fellow human being.

Beautiful, thought-provoking piece. I have been turning it over in my head all week. This type of writing is what keeps me coming back reading your posts week after week. Just a little honest (totally unsolicited, hopefully not off-putting?) feedback–at the end, the comparison to tribal cultures felt a bit disingenuous. Isn’t viewing disabled kids as shamans, with a form of “augmented” humanity, analogous to the type hero worship and separation you criticize in the essay? Although it’s certainly preferable to the treatment they receive in our society, it seems to me it would also have the effect of separating out individuals with special needs, rather than integrating them.

To our eyes? Perhaps. But keep in mind that to these cultures, shamans are an important part of their society. They don’t see shamanism as something metaphorical. It’s a very real part of their world, and preparing children to bridge that space between this world and a spirit world that these people believe is very real is a huge honor. I don’t think it’s all that separate; it is in fact a huge part of their daily lives. They are ultimately integrated deeply in the culture.

It’s also worth remembering that in non-industrial, non-western cultures, apprenticeships are the norm. So kids who are selected as shamans early on may not be all that different than kids who are chosen as carpenters or horse riders or farmers. Only different in the reverence shown by the society, but I don’t think that’s because they’re different so much as their position in the culture is pretty high.

I’m glad Robert brought up tribal cultures, because the most powerful line is at the end: “They’re barbarians. We have nothing to learn from them. Right?”

We each have gifts to give to the world. Each of us. We each have things to teach to others. It’s errant hubris to try to place a value on an individual. People who do that are expressing their opinions on what they value and pretending like it’s some absolute truth. Even for the most severely disabled, we don’t know who’s lives were touched or how his gifts have rippled out. But this last sentence shouldn’t even be necessary to make, because Robert is right – to fully express our humanness, we must intrinsically value each human.

The argument over limited resources may be just a tad more palatable if we weren’t wasting vast sums of money on pointless wars (including the drug wars) and if we weren’t giving vast sums of it to the rich in the form of corporate subsidies, corporate bailouts, significantly lower taxes than the middle class (really, why should capital gains tax be lower than income tax?), and if the government wasn’t paying vast sums to pharmaceutical companies because of overly generous patent laws written by the rich. I could go on and on about how the rich suck out far more tax dollars than anyone else on the backs of the middle class (“quantitative easing” anyone?). In short, we really do have plenty of money to show our humanity.

Precisely, Ginger! I love that Robert brought tribal culture into the conversation, and I think your points are spot on. We all have wounds, disabilities, and many true and beautiful gifts to bring to the world.

This is a wonderful article, Robert, and the comments are all thought provoking. Thank you.

Here is the issue as I see it: What good is it doing to have children in a classroom where the subject matter that is to be covered is not going to comprehended by some of these children? We don’t let kids in a calculus class who have not made the academic benchmarks so that they have a chance at learning most of the material covered. Those kids, and that is the majority of them, are placed at a level where they can learn the materials. It’s not so much for the benefit of those who are at the point that they can learn calculus, but for those who can better benefit from the presentation of material more geared to their comprehension level.

I can see why parents are upset where there are children in the classroom whose academic readiness is such that they cannot even go 25% in terms of comprehending the material. Or any of it. They are there for social purposes, and an aide or the teacher is supposed to be taking, say middle school level material and presenting it to such students at their level of comprehension. Wouldn’t it be better for such children to be in an academic setting that is geared to their level instead of having it watered down to them? WOuld those children not learn more that way, and if those children are at third grade level, kindergarten level, if the entire hour was devoted to presenting and discussing the material at their level, would it not be more productive?

And, yes, it does take away from the kids in the class that are at the level that the instruction should be, if time is taken out of that hour to accommodate those who cannot possibly learn that material but can in a simpler form but it has to be broken down for the maybe one in the class with this need. Even more if the classroom should have a number of kids who are outside the parameters of what those in that class should be learning that year.

For a child who is physically handicapped, to provide the support so that he can understand the instruction, and can learn the material presented at that level of difficulty is a whole other story than diluting and simplifying the material to the level of a student who cannot possibly learn at the level where it is deemed that class must learn.

Returning to the Calculus analogy, some kids will belong in basic math, some in algebra, geom, pre calc before they can get to the calc or perhaps they will never get there, but for them to be in the calculus class is doing no one, themselves included any favors.

“Here is the issue as I see it: What good is it doing to have children in a classroom where the subject matter that is to be covered is not going to comprehended by some of these children?”

But who makes that determination, Cath? Who looks at a child who is hard to reach and decides that they are unable to comprehend the class material?

Do you think they come with an instruction label on their head, like a plant at a nursery? Description of their disability, a little chart showing exactly what they’re capable of, maybe some feeding and watering instructions?

Who has the ability to look at a child with cognitive and communicative disorders which may take years to even identify, much less figure out, and determine that they’re not going to understand the class material? The teacher? The special education team or therapists? The school board? You?

I guaranty that if you ask a hundred special needs parents if a teacher or doctor ever made a prediction about a child’s ability to so something that turned out to be wrong, every single one of them would have a story for you, or a dozen stories. Are you willing to take the chance that you’re wrong about a student’s abilities just so you can create a perfect learning environment for the kids you think should be there? What about the neurotypical kids who turn out not to have the skills for one class or another? At what point do you give up on them?

I’m going to make my own personal argument that the sanctity of the calculus room is far less important than giving every public school student an opportunity to find his or her own limits, no matter how extreme you may find their disability. I think of how many teachers at Schuyler’s first school didn’t bother teaching her to write or even read, because an early evaluation said she would be incapable of either skill. I think of the many, many students who were finally given assistive technology to use for communication and turned out to have a rich inner intellectual life than had simply gone unexpressed and therefore unidentified for years.

I guess my question for you is this: How many of those kids should fall through the cracks before it is no longer an acceptable loss in favor of creating a perfect learning environment for the neurotypical kids? For me personally, that number is pretty low. Yours may differ.

I found myself recently in the bizarre position of having to advocate for the right of my high school daughter to take a science course…to one of the higher ups in Special ed.

My daughter is autistic and Deaf and needs an aide in order to have a hope of being successful in a mainstreamed high school course. She also LOVES science. This woman whose job it is to facilitate special education asked me if I really thought my daughter would end up in a job in the field of science. BUH? I asked her if that was a requirement for typical students wanting to take science classes (a required course for graduation) which, as you can imagine, shut that right down.

As a Quaker with a disabled sister, I’m a little embarrassed that you wrote about Quakerism and disability advocacy in the same essay before I did (I write about both, but generally separately). I suppose it’s such a given to me that I don’t think about it.

I’m responding to this so late because I just got back from a week camping out in the desert with 400 Quakers, btw. 🙂